Total number of respondents: 42

Age: 20-30 1, 30-40 5, 40-50 18, 50-60 11, 60-70 4

Gender: M 13; F 29.

1.What is your primary diagnosis?

Arachnoiditis 25=60%

MS 1; FMS/CFS 4; DDD 1; CES 3; Low back pain 1; CES+lumbar radiculopathy 1; Lumbar stenosis 1; cord compression 1; epidural fibrosis 1; Reiter's/Rheumatoid Arthritis 1

(MS=Multiple Sclerosis; FMS=fibromyalgia; CFS= Chronic fatigue; CES= Cauda Equina Syndrome)

3.Do you have any other diagnoses? These included:

FMS 7; Thyroid disease 4; MPS 2; DDD 9;Neurogenic bladder 2; FBSS 5;Osteoarthritis 7; RSD 2; Trigeminal neuralgia 1; MCTD 1; CTS 1; endometriosis 1; sickle cell trait 1; non-specific inflammatory arthritis 1; Subarachnoid haemorrhage 1;Polycystic Ovarian Syndrome 1; CES 1; arachnoiditis 1; GERD 2; hypertension 2; PAN 1 ; Diabetes 1; Bipolar Affective Disorder 1; Depression 1; Migraines 2; Tricuspid valve disease 1; IBS 2; Hypermobility syndrome 1; Mitral valve prolapse 1; Osteoporosis 1; Spinal stenosis 2; Psoriasis 1; post-infectious Epilepsy 1; Raynaud's 1; Spina Bifida Occulta 1; Erythema nodosum 2; Granuloma annulare 1

(MPS= myofascial pain syndrome; FBSS= Failed Back Surgery Syndrome; RSD= Reflex Sympathetic Dystrophy; MCTD= Mixed Connective Tissue Disorder; CTS= carpal tunnel syndrome; GERD= Gastro-esophageal reflux disease; PAN= Pandy's Autonomic Neuropathy; IBS= irritable bowel syndrome)

4.What type of pain do you have..burning../stabbing../ gripping../aching.../electric shock.../other. All types were experienced.

Do you also have loss of function (say muscle weakness, bladder problems etc.)?.36= 86% with loss of function (includes decreased mobility, loss of bladder/bowel/sexual function etc.

5.What intensity of pain would you say you experience on average? ( On a scale of 1-10, 0 being no pain, 10 being unbearable pain.)

Average 5 = 35 = 83%

Average 5 = 7 = 17%

Amount of relief from current medication|:

50% = 29 = 69%

50% = 8 = 19%


no response to question: 3

7.What medication are you on currently? Please state exact doses and timing .

a. Opiates* Oxycontin 5; Darvocet 2; Percocet 1; methadone 3; Vicodin 2; oxy IR 1; hydrocodone 1; Dilaudid 1; dihydrocodeine 1; MS Contin 1; oxycodone 1;
b. More than one: Oxycontin+OxyIR 1; MSContin+ MSIR 1; Vicoprofen+ Ultram 1; methadone + MSIR 1; oxycontin+roxycontin 1;
c. INA: 3 of which 1+roxicodone; 1+ultram; 1 with clonidine
d. Transdermal (fentanyl) 2(of which 1+Lorcet)
f. Antidepressants tricyclics: 5 SSRIs 13 combination: 2 (amitriptyline + sertraline; prozac+ imipramine). Also mirtazepine 1; Welbutrin 1; trazadone 1; serzone 1 TOTAL=24=57%
g. Anticonvulsants Neurontin(gabapentin) 11; Topamax(topiramate) 1; Depakote (divalproex)1
h. TOTAL =13=31%
i. Muscle relaxant: Baclofen 6; Zanaflex (tizanidine)3; Flexeril(cyclobenzaprine) 4; Robaxin (nabumetone)1; Soma (carisoprodol) 1; Soma+ lamotrigine 1; Norflex(orphenadrine citrate) 1
TOTAL =17=40%
j. Anti-inflammatory.traditional: NSAID(ibuprofen etc) 6 Cox-2 inhibitors(Vioxx, celebrex) 6
TOTAL =12=28.5%
k. Benzodiazepine .Ambien(zolpidem tartrate) 3; Klonopin(clonazepam) 5; Xanax (alprazolam) 2; Ativan (lorazepam) 1; Temazepam 2; combinations: temazepam+clonazepam 1; ambien+ clonazepam 1.. TOTAL= 15=36%
l. Diuretics (for fluid retention) 5
m. Steroids 3
n. Other: Oxybutinin 2 Coproxamol (dextropropoxyphene+paracetamol) 1; Ritalin 1; dexamethorphan 1
*Oxycontin= oxycodone (4 hourly usually) oxyIR=immediate release;


Percocet =oxycodone+acetaminophen


MS Contin=sustained release morphine=oramorph SR (usually 12 hourly); MSIR=immediate release morphine

Dilaudid=hydromorphone HCL (usually 2mg 4-6 hourly)



Lorcet/Lortab=hydrocodone + acetaminophen (usually 4-6 hourly)

Have you undergone surgery of any kind? Please give details (when, what operation) various surgical procedures, of which 23 had spinal surgery

Have you ever had one of the following:

a.. Epidural steroid .24=57%.
b.. Epidural anaesthetic.19=45%
c.. Facet joint blocks.7=17%
d.. Trigger point injections.12=28.5%
e.. Nerve blocks.17=40%
Have you ever used/are currently using:

a.. TENS.11 (+5 found it ineffective)
b.. Spinal cord stimulator.5( 2 of which in the past but not now)..
c.. Intraspinal pump 3
Have you taken/are you taking part in any clinical trials e.g for SNX-111 or 4-AP?(please give details)...none

8. Do you always stick to the prescribed doses or do you need to take extra (either a higher dose or more frequently)? mostly stick to prescribed doses.

9.Do you take any non-prescribed medication(over the counter?) OTC included: Advil 1; Motrin 2; Tylenol 4; Excedrin 2; Equate(aspirin+acetaminophen) 1 Ibuprofen 1

10. Do you take any herbal remedies? Y 18=43% N 24=57%

11. Do you take any supplements?(vitamins/minerals etc.) Y 30=71% N 12=29%

12. Do you smoke? If so, how many a day?.Y 17=40% N 23=55% ex 2

13. Do you use any illicit drugs e.g. cannabis, amphetamines? N 35=83%; tempted to 2; tried 2; using: 3: all marijuana

14. Do you drink coffee? How many cups a day (not including decaffeinated)? High (5 cups) 8; low(5 cups) 16; none 18

16. How much alcohol do you drink per day?(what type, what time of day).none: 29=69%; occasional 8; moderate 8 of which 2 use alcohol to help with pain

Most of those who refrain completely from alcohol do so due to the medication they take.

17.What sort of diet do you eat?(?regular meals, frequent snacks, poor appetite etc.) normal 31=74% small 10 fluctuating 1

18. Have you gained or lost weight in the last year? Gained 16=38% (medications such as neurontin, antidepressants, steroids; also inactivity) Lost 10=24% (medications such as fentanyl and oxycontin:due to vomiting; pain)

20. Have you had to discontinue any medication due to intolerable side-effects? Please give details.numerous drugs especially opiates (nausea/fluid retention) NSAIDs(gastrointestinal problems)

21. Have you any drug allergies? Y 32=76% N 10=24%

22. Do you undertake any nonmedical treatments such as physical therapy, behavioural, relaxation? Physical therapy 4 Chiropractic 3 Osteopath 1(LLLT**) Acupuncture 1; water therapy 4 ;massage 1; therapeutic touch 1; non-specific 2; Relaxation/meditation 10

24. How helpful do you find these visits? The majority of respondents had tried various practitioners but discontinued as they were unhelpful or even made things worse. The numbers above reflect those who are currently attending/using these techniques. **=Low Level Laser therapy

25. Have you visited or been referred to a psychiatrist/psychologist in the last year? Y 20=48% (reasons include pain management, depression, Insurance company requirements, assessment for implant) generally quite helpful.

26. How many hours sleep do you get at night? 6 hours 23=55%;  6hours 19=45%

30. Able to undertake some work/useful activity? Y 35=83% N 7=17%

31.What sort of other symptoms (which may or may not be due to adverse effects of medication) do you experience?...

a. Oversedation(please state what time of day).9=21% (commonly in the morning)
b. Insomnia(what time of night)19=45% (often either on first going to bed or 3-4 am)
c. Fluid retention.14=33%
d. Dry mouth.17=40%
e. Headache.22=52%
f.  Constipation.29=69%
g. Itching/skin rash.19=45%
h. Nausea/vomiting.16=38%.
i. Indigestion/heartburn.15=36%
j. Cold sweats.19=45% often at night
k. Depression .17=40%
l.  Restlessness (what time of day?) 18=43% commonly evening/night.
m. Tremors/muscle spasms(what time of day?) 33=79% often evening/night
n. Agitation/aggression.13=31% may be related to pain level
o. Fatigue(what time of day is worst).30=71% mornings/ evenings tend to be worst
p. Problems with thinking clearly(what time of day is worst) 23=55%
q. Confusion.10=24%
r. Dizziness.14=33%

32. How do you rate your quality of life? Good 7 (17%) Fair 21(50%) Poor 8(19%) .Awful 6(14%).

33.Do you ever feel that life isn't worth living? Y 23=55% N 19=45%

34.Do you have good family support? Y 30=71%.N 12=19%

35.Do you manage to socialize? Y 26=62% N 16=38%

36.Do you feel isolated? Y 30=71% N 12=19%

38.What is the single worst aspect of your illness that you would most like to be treated more effectively? Pain 14; pain and loss of mobility; pain & fatigue; doctors not understanding; doctors not treating pain aggressively enough; being unable to sit; not getting pain medication; not being believed; "destructive problems"; change in personality due to medication ; loneliness; numbness; pins and needles; public perception; weird symptoms.


1. 60% of respondents had diagnosed arachnoiditis, the other 40% comprising a variety of diagnoses.

2. 86% have some functional deficit.

3. 74% of respondents use regular opiate medication

4. the majority of respondents use neither alcohol nor illicit drugs. Only 40% smoke.

5.nearly half have visited a psychologist/psychiatrist in the last year; many found this of some benefit. However, visits to alternative therapists and use of herbal medicines were not found as helpful.

6.76% of respondents have drug allergies: this is a high proportion!

7.commonest side effects are muscle spasms* (79%) fatigue* (71%), constipation(69%)

*but these may be part of the condition suffered by the respondent

8. 83% of respondents rate their average pain level at more than 5 out of 10.

9. 69% rate their pain relief from their current medication to be less than 50%

10. 50% rate their quality of life "fair" whilst 19% rate it poor and 14% awful.

11.Over half (55%) say they have felt life is not worth living.

12.the majority(71%) feel isolated despite 68% being still able to socialize and 71% having good family support.



This small anecdotal survey demonstrates that many patients who suffer from chronic pain, regardless of the causative condition, continue to experience unrelieved pain despite strong medication, including opiates. This pain impinges on their lives considerably and contributes to problems such as feeling isolated. Over half of the survey group admitted that at times they have felt life is not worth living.

To sum up, the problems mentioned in response to question 38 (What is the single worst aspect of your illness that you would most like to be treated more effectively?) convey the suffering that chronic illness has brought to the participants of this survey : Pain ; pain and loss of mobility; pain & fatigue; doctors not understanding; doctors not treating pain aggressively enough; being unable to sit; not getting pain medication; not being believed; "destructive problems"; change in personality due to medication; loneliness; numbness; pins and needles; public perception; weird symptoms.

My sincere thanks to members of NASAP, COFWA, ASAMS and the Cauda Equina Support group who took part in this survey.

I hope the results are of some help to you all: if nothing else, you will see that you are not alone!

Dr. Sarah Andreae-Jones, MB BS Patron of the Arachnoiditis Trust
January 2000.
Posted March 16, 2000 09:50 AM
Published April 3, 2000